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为什么我要说说得了癫痫的生活 – 译学馆
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为什么我要说说得了癫痫的生活

Why I speak up about living with epilepsy | Sitawa Wafula

我先坦白一下
I have a confession.
从十七岁开始
I have been in an affair
一直在经历一件事
since I was 17 years old.
我希望可以倾诉 我心中的苦水
I wish I could talk about butterflies in my stomach
或分享我画在地上的地图
or maps I drew on the ground
但一想到这件事
when I think about this affair,
我做不到
but I cannot.
我也希望可以说说 听到的那些暖心话
I wish I could talk about sweet words spoken
或从这件事中
or gifts that I received
得到的收获
from this affair
我也做不到
but I cannot.
我只想和你们谈谈之后的事
All I can tell you about is the aftermath,
夜以继日 我不断地自问
about days I spent constantly asking:
为什么 为什么 为什么是我
Why, why, why me?
事情是这样的
I remember how it all began.
当时我高中最后一年
I was in my final year of high school,
我们班刚赢了体育比赛
and my class had just won in sports,
我们欢呼雀跃互相拥抱
so we were singing and dancing and hugging each other.
我回去洗了澡
I went and took a shower.
然后去吃晚饭
Then I went for dinner.
当我坐下准备用餐时
And when I sat down to eat,
我的牙齿开始打颤
my teeth started chattering,
所以无法进食
and so I couldn’t put the spoon in my mouth.
我冲到了医务室
I rushed to the nurse’s office,
由于不能说话 我就指着嘴
and because I couldn’t talk, I just pointed at my mouth.
医生不知道出了什么事
She didn’t know what was happening,
她让我先躺下
so she told me to lie down,
这个方法果然有效
and it worked —
几数分钟之后 不再打颤了
after a few minutes, the chattering stopped.
当我准备离开时 她告诉我
I was about to dash out, and she told me —
我必须回宿舍睡觉
no, she insisted — that I go up to the dormitories to sleep.
当时正处于我高中最后一年
Here I was in my final year of high school,
离高考只有几个月的时间
just a few months from doing my end of high school exams
相隔几天就是肯尼亚的模拟考试
and a few days from doing a set of exams we call here in Kenya “mocks,”
这种考试用于帮助学生评估自己和高考总分的差距
which are somehow meant to gauge how prepared one is for the final exams.
我根本就不可能休息
There is no way I was going to sleep
这样我怎么面对考试
and let a set of exams mock me.
我去了教室 坐下之后
I went to class, sat down,
翻看我的肯尼亚历史笔记本
took my Kenyan history notes,
我当时在肯尼亚海边城镇
and there I was, down Kenyan coastal town,
和伟大的麦卡蒂利·利瓦门扎在一起
with the great Mekatilili wa Menza,
她是米吉肯达卡亚圣林人曾帮助她的部落反抗英国殖民法规
the Giriama woman who led her people against British colonial rule.
在毫无征兆的情况下
Then, without any notice,
我的左手开始抽搐
my left hand started jerking,
姿势看起来好像我在想象的纸张上打钩
and it was as if I was marking imaginary papers.
由里向外
In and out it went,
每一次都这样划动 一个接一个
and with every stroke, one by one,
同学们无法专注于阅读
my classmates stopped concentrating on their reading
开始注视着我
and started looking at me.
我极力去制止这个动作
And I tried really hard to stop it,
但压制不住
but I couldn’t,
因为它有自己的活动规律
because it had a life of its own.
最后所有人都注视着我
And then, when it was sure everybody was looking at us,
当着全体同学的面
in its final show and official introduction,
我第一次彻底发病
I had my first full-blown seizure,
在那之后 长达15之久我一直饱受疾病折磨
which was the beginning of what has been a 15-year-long affair.
无论是哪一种类型的癫痫 抽搐是最普遍的症状
Seizures are the trademark characteristic for most types of epilepsy,
第一次的抽搐需要医生的检查
and every first-ever seizure needs to be assessed by a doctor
从而判断是否患有癫痫
to determine if one has epilepsy
或者判断是否属于其他疾病的症状
or if it’s a symptom of something else.
而我刚好被确诊为癫痫
In my case, it was confirmed that I had epilepsy.
那时我开始辗转于医院和家之间
I spent a large chunk of my time in hospital and at home,
回家只为准备高考
and only went back to do my final exams.
我经常在做试卷时发病
I had seizures in between papers,
但还是努力取得了不错的分数
but managed to get good enough grades
最后考进了内罗毕大学
to be admitted for an actuarial science degree
精算专业
at the University of Nairobi.
(掌声)
(Applause)
大二时我不幸辍学
Unfortunately, I had to drop out in my second year.
因为我没有足够的应对技能
I didn’t have good enough coping skills
自己周围也没有支持团体
and a support community around me.
我非常幸运地找到了一份工作
I was lucky enough to get a job,
但是由于工作期间发病 被开除了
but I was fired from that job when I had a seizure in the workplace.
我当时陷入了一种处境
So I found myself in a space
我不断地反问自己
where I was constantly asking myself
为什么这样的事发生在我的身上
why this had to happen to me.
很长一段时间 我不能接受现实
I lived in denial for a long time,
这种抗拒 可能是由于发生在我身上的事引起的
and the denial was maybe because of the things that had happened,
大学辍学 工作中又被开除
dropping out of school and being fired from my job.
也可能是因为我对癫痫
Or maybe it was because of the things I had heard about epilepsy
对癫痫病人的生活的耳闻引起的
and about people living with epilepsy:
他们一辈子都无法独立生活
that they would never live on their own;
不能独自远行
that they would never travel on their own
甚至找不到工作
or even get work;
他们是被放逐的人
that they were outcasts,
并活在这样的信念中
with a spirit in them that they needed to be delivered from.
我越去想这些事
And so the more I thought about these things,
我癫痫发作的次数也越来越多
the more my seizures became,
曾经数日 我四肢麻木
and I spent days with my legs locked,
口齿不清
my speech became blurred
最后 看起来就是视频中这个样子
and on days on end, this is how I’d be.
发作后的两三天
Two or three days after a seizure,
我的头和手还会继续抽搐
my head and my hand would still be twitching.
那时我觉得很迷茫
I felt lost,
感觉我失去了一切
like I’d lost everything,
有时
and sometimes,
甚至想过轻生
even the will to live.
(叹息)
(Sigh)
我内心充满了强烈的挫败感
I had so much frustration in me.
于是我开始写作
And so I started writing,
因为我周围没有人能解答
because the people around me didn’t have answers
我的疑问
to the questions that I had.
所以 我写下自己的恐惧
And so I wrote my fears
我的疑虑
and my doubts.
写下我开心的日子 难过的日子 甚至绝望的日子
I wrote about my good days and my bad days and my really ugly days,
并把它们分享在博客上
and I shared them on a blog.
没过多久
And before long,
癫痫病患者和他们的家人
I began to be seen and heard by people who had epilepsy
开始关注到我
and their families,
甚至还有那些没有患病的人
and even those who did not have the diagnosis.
然后我从刚开始的怨天尤人
And I moved from that girl who constantly asked why me
成为 不仅自己激励
to one who not only self-advocates,
还鼓励那些没找到存在意义的病友
but does it for those who are yet to find their voices.
(掌声)
(Applause)
我发病的次数大大减少从原本的一天两三次
My seizures are greatly reduced, from two to three times a day,
降到一年两三次
to sometimes two to three times in one year.
我开始
I went on —
(掌声)
(Applause)
我开始雇佣五名员工
I went on to employ five people,
成为肯尼亚第一家非盈利
when I began what was Kenya’s first
精神健康和癫痫咨询热线
free mental health and epilepsy support line.
我去了……
And I travel —
(掌声)
(Applause)
我去各地分享了我的事迹
And I travel to speak about my affair,
分享所有人们曾经告诉我
all these things that I had been told
癫痫病人做不到的事
people like me living with epilepsy could never be able to do.
全球每年都有相当于
Every year, a population as big as 80 percent of Nairobi
内罗毕80%之多的人口
gets diagnosed with epilepsy
被确诊为癫痫
across the globe.
和我一样
And they, like me,
他们饱受精神的折磨和他人的排斥
go through the emotions of stigma and exclusion.
所以 我就要使这样的分享继续下去
And so I have made it my life journey
使之成为我的终生事业
to keep these conversations going,
我不断分享自己的疾病经历
and I keep confessing about my affair
如此一来 没有患病的人
so that those people who do not have the diagnosis
也许会知道 或有一定的意识
might know and might have a constant reminder
和癫痫病人相处是安全的
that it is alright to engage with people like us,
只有精神折磨和被排斥随之瓦解
that as long as they pull down the walls of stigma and exclusion,
像正常人一样
that we, just like them,
我们也有勇气去接受生活赐予我们的一切
can be able to take anything life throws at us.
谢谢大家
Thank you.
(掌声)
(Applause)

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视频概述

和癫痫病人相处是安全的

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翻译译者

Elena

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审核员@XG

视频来源

https://www.youtube.com/watch?v=_B1JmOerYmY

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